You've already received several suggestions regarding potential causes of your symptoms, and this is really more of an attempt at empathy than anything, but my husband spent much of his teenage and adult life experiencing bizarre symptoms-- random pains and tingling in his extremities, chest tightness, fatigue, watery eyes, sinus issues-- and after countless brain and body scans that showed nothing, he developed pretty intense anxiety (as did I) surrounding his undiagnosed symptoms. In turn, his anxiety (which occasionally manifested in panic attacks that sent him to the hospital with heart attack-like symptoms) seemed to exacerbate these issues. Finally, years later, he was diagnosed with sarcoidosis after a small tumor was removed from his neck, and, surprise, all of his symptoms are consistent with the disease. All of this is to say that 1. sarcoidosis is another thing to ask your doctors about (numbness and balance issues are sometimes symptoms); and 2. I understand how frustrating it is to know that something is wrong and not be able to find a cause or solution. Best of luck to you, and please keep us updated!

Result: a nerve test ordered, spinal tap ordered, a sleep study ordered and still no answers. But I'm being told I'm needing to take a mood stabilizer (which may help my sleep cycle) which can cause my symptoms. We'll see what the nerve test and spinal tap show. Two more weeks minimum for those.

_________________~Sweet songs the youth, the wise, the meeting of all wisdom. To believe in the good in man.

Have you had an MRI at this point yet? When they tested your CSF, do you know what all they tested for? Did they look for things like oligoclonal bands that could be present in MS? Did they check the opening pressure? Any seemingly unrelated symptoms going on too? Like, "Oh, I also have problems controlling my bladder but that couldn't POSSIBLY have anything to do with my neuro symtoms"...

I know you might not know the answers to all of these questions, since these are things that doctors talk about amongst themselves and don't discuss directly with the patients in many cases, but it might give us a better idea of what they are and aren't able to rule out yet.

Edited to add: Do you notice that these problems tend to happen more after you've been doing stuff? Like, more likely to happen later in the day, rather than when you first wake up?

Vitamin deficiencies can cause a loss of coordination and muscle weakness-I am reading up on the subject at the moment being that I have one. I have come across that on the list of symptoms as I read up.

_________________"Evolution is a constant process"If God hands you a literal lemon- keep your head up- Build a Lemonade Stand

Have you had an MRI at this point yet? When they tested your CSF, do you know what all they tested for? Did they look for things like oligoclonal bands that could be present in MS? Did they check the opening pressure? Any seemingly unrelated symptoms going on too? Like, "Oh, I also have problems controlling my bladder but that couldn't POSSIBLY have anything to do with my neuro symtoms"...

I know you might not know the answers to all of these questions, since these are things that doctors talk about amongst themselves and don't discuss directly with the patients in many cases, but it might give us a better idea of what they are and aren't able to rule out yet.

I've had an EEG, ENG both of which ruled out abnormalities. I do not think any of the other things have been checked. How do I go about bringing that up? Do I just directly say - um could I have MS?

Quote:

Edited to add: Do you notice that these problems tend to happen more after you've been doing stuff? Like, more likely to happen later in the day, rather than when you first wake up?

Yes and that's the main thing I told them. Was that I'm still and sore in the mornings and sometimes have coordination issues but the numbness and bad confusion and such happen in the evenings.

Sophiagrt wrote:

Vitamin deficiencies can cause a loss of coordination and muscle weakness-I am reading up on the subject at the moment being that I have one. I have come across that on the list of symptoms as I read up.

I've had blood tested and I'm normal since May. I'm up and down but it's something I watch.

_________________~Sweet songs the youth, the wise, the meeting of all wisdom. To believe in the good in man.

Have you had an MRI at this point yet? When they tested your CSF, do you know what all they tested for? Did they look for things like oligoclonal bands that could be present in MS? Did they check the opening pressure? Any seemingly unrelated symptoms going on too? Like, "Oh, I also have problems controlling my bladder but that couldn't POSSIBLY have anything to do with my neuro symtoms"...

I know you might not know the answers to all of these questions, since these are things that doctors talk about amongst themselves and don't discuss directly with the patients in many cases, but it might give us a better idea of what they are and aren't able to rule out yet.

I've had an EEG, ENG both of which ruled out abnormalities. I do not think any of the other things have been checked. How do I go about bringing that up? Do I just directly say - um could I have MS?

Quote:

Edited to add: Do you notice that these problems tend to happen more after you've been doing stuff? Like, more likely to happen later in the day, rather than when you first wake up?

Yes and that's the main thing I told them. Was that I'm still and sore in the mornings and sometimes have coordination issues but the numbness and bad confusion and such happen in the evenings.

Sophiagrt wrote:

Vitamin deficiencies can cause a loss of coordination and muscle weakness-I am reading up on the subject at the moment being that I have one. I have come across that on the list of symptoms as I read up.

I've had blood tested and I'm normal since May. I'm up and down but it's something I watch.

Yeah, I'd definitely mention that you're considering that MS might be a possibility and would like to get that ruled out. It could just be that you have several different things going on, like the nerve damage resulting from that car accident plus other issues, but that doesn't mean they should assume! I don't think at this point it's unreasonable for a doctor to order an MRI with gadolinium contrast just to check and make sure everything is okay. I get a doctor/insurance company not wanting to get one for acute problems since they're rather expensive and time consuming, but for someone who appears to have widespread neurological symptoms chronically, it makes perfect sense to get one. Beyond that, a spinal tap checking for opening pressure and oligoclonal bands might be helpful as well, but yeah... first things first: MRI.

This, of course, is just based on what I've read in this thread. Maybe they have their reasons that they're thinking along a different line than I am, based on other medical history or whatever. Do you live in the US or are you somewhere else? I know the US tends to be pretty MRI-happy in comparison to other countries, so that might be playing into the different diagnostic methods as well.